The mother of a young girl with severe epilepsy is ‘terrified’ of what will happen to her daughter when a vital treatment is taken away.
Darcy Holt, six, suffers from tuberous sclerosis (TS) – a condition that means she develops tumours that lead to illnesses including epilepsy.
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For several years she has been on a trial for the medication Everolimus, which her mother Jessica said reduced the number of seizures she has a day from around 80 to just two or three.
But now NHS England has decided not to fund the drug for people with TS and it appears that Darcy’s treatment will stop.
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Mrs Holt said: “Before the treatment Darcy had no quality of life. She wasn’t developing normally, she was struggling and we were really scared.
“Now after three and a half years she is talking, walking and enjoying life. She is ale to go to the park and the cinema - things she couldn’t do before. It changed her life, there is no doubt about it.
“Our concern if the treatment stops is she could be back to square one. I saw how ill she was before and it is terrifying she could have to go back to that and everything good could be taken away.”
The drug is funded by the NHS for TS in Scotland but not in England.
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Maxine Smeaton, chief executive of the Tuberous Sclerosis Association, said: “The difference that everolimus makes is unprecedented, and the TS community in England will be devastated by this news.”
An NHS spokesman said: “The panel of doctors, clinicians, and the public assessed Everolimus for refractory seizures associated with tuberous sclerosis complex and concluded that it delivered limited benefits compared to other treatments being considered.
“This treatment can be considered again for funding in November but drug companies have an important part to play by pricing their treatments responsibly.”